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MAHA’s Treatments for Autism: Camel’s Milk, Stem Cell Injections — And Spelling Therapy

Arthur Allen — Mon, 08 Jun 2026 09:00:00 +0000

Elizabeth Bonker is a silent woman with a loud mission. She wants government agencies to cover the costs of training people with autism in a form of communication called assisted spelling. One problem: Leading professional organizations don’t believe it works.

“All nonspeakers above the age of 5 should be given the opportunity,” typed Bonker, who is 28 and cannot talk. Her mother, Virginia Breen, held a wireless keyboard for her. They sat on a hotel patio before an April 27 meeting with a senior aide to Health and Human Services Secretary Robert F. Kennedy Jr.

“We are misunderstood and underestimated,” Bonker typed, occasionally humming or lightly groaning as she considered where to place a slender forefinger on the keyboard.

Assisted spelling is used to help nonverbal people communicate by pointing to letters on boards or using keyboards with physical help from another person.

Supporters say assisted spelling has improved the lives of thousands of people with autism, such as Bonker, and they have powerful allies. Kennedy appointed Bonker and another autistic “speller,” as they call themselves, to a 20-member autism panel made up largely of parents with children whose autism they attribute to vaccinations.

At the reconfigured panel’s first public session on April 28, three other members said their nonspeaking adult children were learning to communicate through spelling. The panel issued a resolution with stating that “robust” communications programs are essential for autistic people. Bonker has urged the Department of Health and Human Services to support training in assisted spelling for those who want it.

But leading for , as well as those representing and , that these methods — premised on the idea that people with autism have the normal range of cognitive powers but are imprisoned in malfunctioning bodies — are flawed or fraudulent.

Other, validated methods enable nonspeakers to communicate through digital and analog pictures and letter boards. But assisted spelling isn’t autonomous communication, critics say: Consciously or not, the board holder may be influencing or responsible for the typed or pointed-at words — as with a Ouija board.

For many parents in Kennedy’s Make America Healthy Again community, the spelling controversy is angrily ringing the same bells as the notion that vaccines cause autism — which they refuse to consider debunked. As some people see it: Established medicine damaged them with vaccines and now refuses to accept a helpful treatment.

People with autism are “trapped in bodies that have betrayed them because the medical establishment has betrayed them,” said Louis Conte, who has a child with autism, in a of a Kennedy-allied MAHA publication.

By limiting access to spelling, “you are not just limiting expression, you are erasing identity,” said Katie Sweeney, the mother of an autistic adult who is affiliated with an anti-vaccine , at the autism panel meeting.

Mainstream autism experts and advocates in March convened the Independent Autism Coordinating Committee as a counter to Kennedy’s panel. At the new group’s meeting, one member spoke out against the spelling methods.

“In this underfunded disability environment, I don’t want a single penny diverted to debunked interventions like spelling,” said , a senior lecturer in history at the University of Pennsylvania and an who described her 27-year-old son as “profoundly autistic.”

It’s not only a waste of time, she said later in an interview, but “people subjected to spelling are not given access to evidence-based education. Every interaction turns someone like my son into a puppet, and I find that very objectionable.”

A Patchwork of Perspectives

The universe of autistic people, their parents, researchers, advocates, and service providers is a broad, acrimonious spectrum. Some say that vaccines or chemical exposures caused a massive increase in autism, others that diagnostic changes account for most of the increase. Some seek mainstream or alternative treatments, some demand classroom inclusion, and others want residential treatment. Some people with autism say it’s a difference, not a disability.

“When I tell the parents of a young child they have autism, it’s a tragedy,” said Audrey Brumback, a child neurologist at Dell Medical School at the University of Texas-Austin. “When I give the same diagnosis to a teenager, it’s good news. It means, ‘There’s nothing wrong with you; you’re just autistic.’”

Scientific medicine has failed to deliver good treatments for autism. After four decades of concerted research, “the results have for the most part been very disappointing,” said David Mandell, a professor of psychiatry and pediatrics at the University of Pennsylvania.

Severely autistic children — those requiring round-the-clock care with ailments like epilepsy and generally lacking in verbal language — account for of all U.S. autism diagnoses. Caring for them may mean dropping careers and spending vast sums on therapy. “They ought to spell special education with a dollar sign,” said Tracy Simmons, whose 17-year-old son, Noah, has autism.

Many parents of autistic children have tried vitamins and diets that exclude wheat, soy, or dairy. Some have turned to hyperbaric oxygen chambers, others to pig hormones to repair damage spuriously attributed to measles-mumps-rubella vaccines, and infusions of metal-leaching chemicals to remove traces of heavy metals in childhood shots. Recent regimens include camel’s milk, broccoli extract, and stem cell injections obtained at great expense in Panama and India.

In September, the White House touted leucovorin, used in some cancer care and for an ultra-rare genetic condition. Marty Makary, then-commissioner of the FDA, said the drug could help 50% to 60% of kids with autism.

There’s little evidence behind any of these treatments, Brumback said. Many parents try multiple remedies at once; if a child’s condition improves, it’s hard to tell what worked — or whether the child simply grew out of a problem.

Noah Simmons has spent two years learning to spell and type. At a climbing center in Gaithersburg, Maryland, he communicated with the aid of his mother, Tracy Simmons, who is holding a laminated sheet with the alphabet. (Arthur Allen/�鶹Ů�� Health News)

Noah Simmons glides down the rope at a climbing center. He high-fived his instructor and then beamed as he spelled out, “Im going to crush it again!” (Arthur Allen/�鶹Ů�� Health News)

Noah the Speller

During a Zoom session in which he typed on a keyboard held by his mother, Noah Simmons wrote glowingly about the world opened to him by two years of learning to spell and type.

“Im a new person. I have friends, I write, climbing,” he typed. “Conversation. I can have one. I have a say. Im human now.”

Later, at an indoor climbing center in Gaithersburg, Maryland, Noah scrambled nearly to the top of the wall before he slipped. He glided down the rope and slapped a high five with his climbing instructor as his mother approached. She carried a laminated sheet with the alphabet on it.

Tracy Simmons held the paper while Noah stabbed at the letters one by one, ending with a flourishing swipe at the exclamation mark: “Im going to crush it again!”

There, and at a later keyboard session at home, Noah seemed in control. But when Tracy stopped offering verbal prompts and encouragement, or stopped holding the board, Noah often got lost and signaled a need for help.

Tracy Simmons acknowledges that whoever holds the board could be steering a speller’s words. Despite his climbing prowess, Noah lacks fine motor skills, is anxious, and has trouble controlling his body, she said.

“He’s working on becoming an independent typer. He can do it short amounts of time,” she said. “But at times he gets overwhelmed.”

The method used by Noah and his mother came into use in the United States in the early 1990s. At first, trainers guided the arms or hands of the spellers as they pointed to a letter board. The idea was that the intelligence or literacy of severely autistic people was trapped in bodies they couldn’t control. They needed help physically learning to spell, first with a pencil or finger pointing at stenciled or printed letters, and eventually by typing on a keyboard.

Within a few years, however, dozens of experiments had shown that the facilitators, not the autistic people, were doing the spelling. A that the spellers could identify words or objects without their facilitators.

In addition, the technique has resulted in — sometimes in the autistic person’s life skeptical of the spelling process.

Next came the Rapid Prompting Method, devised by Soma Mukhopadhyay, an Indian mother of a boy with profound autism, who brought her system to the United States in 2001. Elizabeth Vosseller, a speech pathologist in Herndon, Virginia, launched a nearly identical method, Spelling to Communicate. In both, the facilitator, not the speller, holds the letter board. But each method relies on prompts.

Mukhopadhyay and Vosseller, who did not respond to requests for comment, have each declined to submit their systems to the kind of testing that disproved facilitated communication. Bonker said calls for such tests show a lack of respect for the disabled.

Asked why, after 23 years as a speller, she couldn’t communicate alone or without her mother holding the board, Bonker typed, “I can do it in certain environments that don’t include interviews with strangers.” Severely autistic people need coaches to help control their anxiety, Breen said.

Another star of the speller world, Woody Brown, spoke through his mother with Jenna Bush Hager on the Today show on April 1. The Browns were promoting his novel, Upward Bound, which became an immediate New York Times bestseller after its March release. During the segment, Mary Brown spoke in complete sentences that she said came from Woody, but the letters he typed, as far as the program’s viewers could see, did not correspond to her words and often looked like gibberish.

This raised questions about how Woody Brown could be the author of what critics described as a brilliant, sensitive novel. They pointed out that Mary Brown has worked as a Hollywood script analyst. The Browns did not respond to efforts to reach them for comment.

“Spellers” are best known to the public through the success of The Telepathy Tapes, which briefly unseated The Joe Rogan Experience as the country’s most popular podcast early last year. In The Telepathy Tapes’ first season, people with profound autism were allegedly revealed as clairvoyant superhumans.

The evidence for their telepathic abilities was produced through spelling. The host showed spellers and facilitators two things, and the speller, with the facilitator present, typed out what the facilitator saw. Viewers had to wonder whether this was evidence of telepathy or confirmation of what critics have said all along: that the facilitator is the one controlling the words, often by feeding the speller subtle cues.

Bonker said she appreciated the Telepathy Tapes’ host for including her nonprofit group’s information on its website. As for telepathic skills, “I believe nonspeakers have many gifts,” she said. “And I believe what they say.”

The debate over spelling is playing out in boards of education and courtrooms, where parents of autistic children seek aid for their children’s spelling lessons.

In New York state in March, anti-vaccine on state Sen. Patricia Fahy, the Democratic chair of the disabilities committee, after she inserted language into a disability rights bill requiring that payments go to “verified” communication methods that assured patient autonomy.

Vikram Jaswal, a University of Virginia psychologist who works with spellers, said he’s seen people with severe autism who can type independently, though only a handful have that ability out of the couple of hundred spellers he’s met. More research is needed to figure out who can best benefit from the technique, he said.

Tracy Simmons believes in the method, and so does her son — assuming he’s in control of what he types.

On a recent morning, Tracy read aloud a beautiful escape-from-Alcatraz story she said Noah had written with her help and that of his spelling trainer. “He writes all the time in his head,” she said, but it could take years for her son to consistently type independently.

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By September, Nearly a Third of Americans Will Live in States With Legal Aid in Dying

Paula Span — Mon, 08 Jun 2026 09:00:00 +0000

Jules Netherland traveled from her home in the Bronx to the New York state Capitol in Albany several times in the past few years, hoping to persuade the legislature to pass a medical aid in dying bill, allowing terminally ill patients to end their lives with a lethal prescription.

She spoke at rallies. With other members of the advocacy organization Compassion & Choices, she visited legislators’ offices. In 2024, as the state Assembly was debating the aid in dying bill, she helped unfurl a banner in the chamber gallery that read, “Stop the Suffering.”

Her activism was becoming difficult. Netherland, who is 59 and works for a nonprofit, was diagnosed with breast cancer in 2019. “I did a full year of aggressive treatment,” she said. “Chemotherapy. A mastectomy. Radiation treatment every weekday for five weeks. Six months of two oral medications.”

She recovered and felt well until the cancer returned a few years later. Although metastatic breast cancer is incurable, drugs are keeping her disease at bay for now. Netherland feels fortunate but also fatigued, and she contends with brain fog, gastrointestinal symptoms, and joint pain.

“My energy is really limited,” she said.

As she emailed and called legislators, Netherland feared she might die before the aid in dying bill — first introduced in New York in 2016 — could become law.

‘A Breakthrough Moment’

On June 9, 2025, after the Assembly approved the bill, Netherland was in the state Senate chamber, watching the aye votes mount, and seeing it pass. an amended version in February; it is scheduled to take effect Aug. 5.

A similar law is in September in Illinois, which would become the (plus the District of Columbia) where medical aid in dying is legal.

“A breakthrough moment,” said Kevin Díaz, president of Compassion & Choices, which has spearheaded the long campaign for such laws. After almost 30 years — Oregon’s law, the first in the country, was enacted in 1997 — the addition of two populous states means that almost a third of Americans will live in one where medical aid in dying is legally available. “It shows that there’s broad support for this model,” Díaz said.

Polls consistently back that claim. A last spring found that almost two-thirds of respondents didn’t consider the practice “morally wrong,” either because they thought it was acceptable or not a moral issue. Support crossed many political and religious lines: A narrow majority of Republicans and 76% of Democrats both found “physician-assisted death” (also sometimes called “physician-assisted suicide”) permissible; so did most Catholics, Jews, and nonevangelical white Protestants.

In New York, that 54% of respondents supported aid in dying, including majorities of men and women, of all age groups, and of city, suburban, and upstate residents. A plurality of Latinos supported it; Black respondents narrowly opposed it.

Passing these laws has grown somewhat easier, said Thaddeus Pope, a bioethicist and professor at Mitchell Hamline School of Law in St. Paul, Minnesota, who tracks such policies. “You can say, ‘We have 10 years in California, 18 years in Washington, and 29 years in Oregon, and nothing bad has happened.’ It becomes more accepted.”

‘You Need A, B, and C’

Yet legalizing medical aid in dying, or MAID, has been and remains a long, contentious process. Catholic leadership and many disability organizations staunchly oppose it. (Pope Leo XIV personally not to sign the bill.)

The American Medical Association says that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer” and poses “serious societal risks,” although a number of state medical organizations have opted to remain neutral or, as in New York, to .

The Patients’ Rights Action Fund, through a sister organization, has lawsuits pending or on appeal in California, Delaware, and Colorado, arguing that aid in dying laws discriminate against people with disabilities by steering them toward physician-assisted suicide instead of treatment.

“This is a litigation strategy we’ve developed to ultimately get to the Supreme Court,” said Matt Vallière, the group’s executive director, who declined to say whether it would sue to block the Illinois and New York laws.

Even when aid in dying laws succeed, using them can prove challenging. In every state (except Montana, where it became legal through a court decision, so there is no statute governing eligibility), aid in dying is available only to people with incurable illnesses who are expected to die within six months.

It typically involves oral and written requests to two doctors, with mandated waiting periods between requests. Patients must have the mental capacity to make the decision, which disqualifies those with dementia, and they must ingest the medication without assistance. (An amendment Hochul insisted on adds a psychologist or psychiatrist to the process.)

All but two states require patients to be residents. Oregon and Vermont scrapped their residency requirements brought by Compassion & Choices. ( a .)

Moreover, any doctor, hospital, or healthcare system can legally decline to provide aid in dying, and religiously affiliated institutions often opt out. Those that participate can add their own requirements.

“The state can say ‘You need A, B, and C,’ and Columbia-Presbyterian can say, ‘We also want D, E, and F,’” said Pope, the Minnesota bioethicist.

Hotly Debated, Seldom Used

Perhaps these restrictions, or a lack of public awareness, help explain why, despite the headlines and fervent debates, the number of people who actually use the law is tiny in every state — usually 1% or fewer of the deaths recorded annually. The support for giving patients this kind of autonomy at the end of life remains widespread, but the desire to personally exercise it apparently is not.

Still, after studies showed that many patients seeking MAID were dying , the trend has been to loosen restrictions. California cut its 15-day waiting period to 48 hours; New Mexico allows physician assistants and advanced-practice nurses to write prescriptions along with doctors.

“Most states have now amended their laws two or three times,” Pope said. “We have liberalized.” Telehealth can also facilitate access to participating doctors.

Compassion & Choices is planning legal challenges to end residency requirements in additional states, Díaz said. It is also considering how to “make inroads in jurisdictions with a much different cultural and political environment,” he added, mentioning Florida and other Southern states.

Medical aid in dying represents a shift in power, Díaz said. “The person who has to bear the burden of the suffering should have the ability to decide when it’s enough,” he added.

Anne Gurnett Bander, 72, a retired research scientist in Carmel, New York, cared for her husband for four years as ALS — the relentlessly disabling neurological disorder also known as Lou Gehrig’s disease — rendered him bedridden and dependent on feeding and breathing tubes. “By the time he died, the only thing he could do was nod his head,” she recalled.

So being diagnosed with ALS herself last year was “my worst possible nightmare,” Gurnett Bander said. She was planning to fly to Switzerland, where the nonprofit organization Dignitas provides medical aid in dying, when she learned about the New York bill and began speaking publicly in support of it, her voice faltering as her illness advanced.

Gurnett Bander and Netherland say they’re not certain they’ll use lethal drugs to end their lives as their symptoms intensify. Not infrequently, patients complete the necessary steps, secure the prescribed medication, decide they don’t need it after all, and die of their diseases. But both women insist that the choice should be theirs.

“It can offer so much peace of mind,” Netherland said. “I thought, ‘People should have this option.’ Now, they will.”

The New Old Age is produced through a partnership with .

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Untreated Cancer, Festering Infections: Immigrant Detainees Detail Medical Care Lapses

Rae Ellen Bichell — Fri, 05 Jun 2026 18:30:00 +0000

As the current federal administration rounded up an increasing number of immigrants, with U.S. Immigration and Customs Enforcement holding more than 75,000 in mid-January alone, we heard scattered, localized complaints from detainees alleging medical neglect. We wondered about the extent of the problems and whether the agency and its contractors were keeping pace with detainees’ medical needs nationwide. But no central repository exists, so we had to get creative — and dive into a trove of court records.

Detainees are filing record numbers of habeas corpus petitions in federal court, arguing they’re being held illegally. Sometimes those cases mention medical conditions. But a federal rule makes immigration filings tricky to obtain because they’re usually available only in person at the court where they were filed. The nation has 94 of those courts.

However, a nonprofit collecting such records through a national network of volunteers gave us documents from thousands of those court cases dating to last January. We teamed up with The Associated Press to dive into them.

In analyzing those files, we found that hundreds of detainees in at least 33 states told courts they’d received inadequate medical care. They said that they didn’t get their medications on time — or at all — for everything from diabetes to Parkinson’s to HIV. They told courts their requests for medical help had gone unanswered for weeks, that their blood sugars rose, infections festered, and cancers went untreated. Some said they had collapsed and had seizures.

Court filings described how one man had a stroke while on a video call with his daughter and lost his ability to speak for several days. Records show he hadn’t been getting all his medications while detained. Another detainee described standing by the door each day waiting for the eye drops he needed to maintain his waning vision, as he worried whether he would be able to see his infant child grow up. Even after being released, a father of six U.S. citizens told us he feared he wouldn’t be able to support them because of lingering pain in his leg — the leg a doctor told him came close to needing amputation when an infection in ICE custody went untreated until he passed out and was hospitalized.

Such allegations spanned facilities of all types, from county jails to sites like “Alligator Alcatraz,” as the Department of Homeland Security gutted the office in charge of oversight.

�鶹Ů�� Health News and AP asked the agency to respond to our findings, but it did not provide comment. DHS acting Chief Medical Officer Sean Conley has previously said, “It is both policy and longstanding practice for aliens to receive timely and appropriate medical care from the moment they enter ICE custody.”

Detainees’ families said they feel helpless watching their loved ones deteriorate while in custody and hope they don’t join the rising death toll, which has reached 51 since the start of President Donald Trump’s second administration.

Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US

Immigrant detainees have told courts across the nation that detention officials have failed to treat or stabilize their conditions, from pregnancy to prostate cancer, suggesting that systemic lapses in care extend well beyond record deaths in Immigration and Customs Enforcement custody.

By Rae Ellen Bichell, Claire Galofaro, The Associated Press, Maia Rosenfeld, Renuka Rayasam, Aaron Kessler, The Associated Press, and Byron Tau, The Associated Press June 2, 2026

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Millions of Kids Could Lose Insurance as GOP Healthcare Cuts Start To Bite

Julie Rovner — Fri, 05 Jun 2026 09:00:00 +0000

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have lost insurance since President Donald Trump took office in 2025. Another million could lose it amid the Trump administration’s immigration crackdown and new Medicaid eligibility rules. On WAMU’s Health Hub on June 3, �鶹Ů�� Health News chief Washington correspondent Julie Rovner explained how fear and confusion complicate access to health coverage.

(Stefani Reynolds/Bloomberg via Getty Images)

Last year’s big cuts to federal healthcare programs in the Republicans’ One Big Beautiful Bill Act created an affordability crunch for many Americans. They’ve ushered in higher health insurance premiums and confusion about who’s covered under new Medicaid rules.

Another result has been falling enrollment in Affordable Care Act plans and Medicaid. That’s leaving uninsured, according to an analysis by the Georgetown University McCourt School of Public Policy’s Center for Children and Families. �鶹Ů�� Health News chief Washington correspondent Julie Rovner appeared June 3 on WAMU’s Health Hub to explain who’s vulnerable to losing coverage and what it all could mean for the prices Americans pay for health insurance next year.

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Upcoming Billing Change Could Make Pregnancy Pricier

Michelle Andrews — Fri, 05 Jun 2026 09:00:00 +0000

Having a baby in the United States is about to get more complicated.

Under new billing codes that take effect in January, doctors who manage maternity care will start charging à la carte for visits and services related to pregnancy, childbirth, and postpartum care. It’s an about-face from recent years, when doctors have often received a single “bundled” payment for maternity care they provided. Although OB-GYNs strongly and have pushed for it for years, some patient advocates and employers say it’s an open question whether the new system will result in better care or increased patient costs.

The American College of Obstetricians & Gynecologists says the change is crucial to accurately reflect the care OB-GYNs currently provide, with expectant patients — some older and sicker than in decades past — more likely to have complex medical and social needs and receive care in multiple settings from multiple practitioners.

For example, under current bundled obstetrics coding, the number of prenatal visits is set at a fairly arbitrary 13, “which is not really what most people need,” said , chair of the Department of Obstetrics and Gynecology at the University of New Mexico and a member of the ACOG committee that developed the new codes in conjunction with the .

The new fee-for-service codes will better accommodate more or fewer visits, either in person or remotely, based on individual needs.

Under the current system, “if someone comes in for a birth, no matter how long or how short their labor or how complicated or uncomplicated their delivery, the global reporting is the same because we only have one code,” Hofler said.

The new, more precise codes will help the growing number of medical professionals who may play a role in maternity care — such as midwives, hospitalists focused on labor and delivery, and maternal-fetal medicine specialists — to account for, and get paid for, the range of services they provide.

For patients, however, especially the growing number with high-deductible health plans, the new system may result in higher out-of-pocket bills, some maternity experts say.

“The cost piece is really critical,” said , an OB-GYN and the senior vice president for the Achieving Equitable Outcomes initiative at The Commonwealth Fund, a health research nonprofit. “There will be more line items. Will that be passed along to patients, particularly those that are in commercial plans, in high-deductible plans?”

Whether families will pay more out-of-pocket “really comes down to how payers choose to implement these codes,” Zephyrin said.

Insurance industry representatives said they are concerned with the implementation timeline, which will require significant operational changes.

“Rushed implementation of far-reaching AMA code restructuring will fundamentally change how maternity services are managed and reimbursed,” said Chris Bond, a spokesperson for AHIP, which represents insurers. Under federal law, providers and health plans for diagnoses, procedures, services, and supplies. Doctors and other health professionals bill for their services using Current Procedural Terminology codes, which are developed and maintained by the , the main trade group for doctors. The federal Centers for Medicare & Medicaid Services reviews new and revised codes and reimburses clinicians based on a fee schedule, which is updated every year. The CMS review is going on now, and the proposed fee schedule for next year will be published in July.

“We don’t know” whether CMS will go along with the proposed coding changes, said Barbara Levy, vice chair of the AMA’s CPT Editorial Panel. “They were at the table as observers and had opportunities to give inputs throughout the entire process,” she said. In the meantime, the AMA is educating providers and payers about the new coding structure.

Federal law limits how much expectant parents can be charged in certain instances. Under the ACA, most health plans that is considered preventive at no cost to members. The list of preventive maternity services, set by the federal Health Resources and Services Administration, includes prenatal and postpartum visits and screening for diabetes, anxiety, and HIV, among other things.

The global bundle doesn’t cover everything, though, and pregnant people typically already pay some of the cost for certain services, such as ultrasounds, specialist visits, and lab work. They’re also responsible for their portion of labor and delivery professional fees based on their insurance plan (in addition to hospital charges, which are billed separately).

Still, , in which providers are paid à la carte based on the volume of services they provide rather than on health outcomes, has long troubled health policy experts because of its potential to incentivize providers to do more and pricier services. In fact, one of the reasons policymakers moved away from that arrangement for maternity care in recent years was because they believed had the potential to lower costs and improve quality, including reducing the roughly 30% of births in the United States done by cesarean section, which costs significantly more than vaginal birth. (It hasn’t worked. The proportion of births by C-section hasn’t budged under bundled payment.)

“I always worry about anything that is ‘piecemealing’ our healthcare system even more,” said Caitlin Donovan, a senior director at the Patient Advocate Foundation, a nonprofit that provides case management services for sick people in the U.S., of the return to fee-for-service billing.

Even under the current system, patients can get dinged for extra services they may not need. Donovan recalled that when she was 35 and pregnant with her third child, her obstetrician told her that as a “geriatric” expectant mother she needed weekly ultrasounds after her 20th week.

ACOG recommends a detailed first-trimester ultrasound for pregnant patients 35 or older or with known risk factors, according to spokesperson Jamila Vernon. “Subsequent ultrasounds are also based on findings and risk factors. In other words, there is no set number of ultrasounds for all patients,” Vernon said.

“There was nothing that indicated I needed those scans,” Donovan said. “It was just a money grab.”

With roughly babies born every year in the United States, childbirth is one of the most common medical events that people experience.

Still, having a baby isn’t cheap. It costs families with employer coverage , according to an analysis of data from 2021 to 2023 by researchers with the Peterson-�鶹Ů�� Health System Tracker.

About in the U.S. are covered by the federal-state Medicaid program for low-income people. These families don’t generally face out-of-pocket costs for maternity care, and the new billing system won’t affect them financially.

However, ACOG hopes that the new system will help doctors and other medical professionals improve maternity care, particularly after a baby is born.

With a bundled system, it’s often unclear what services were provided during the maternity process, hampering researchers’ ability to evaluate whether specific services move the needle on maternal mortality rates, in which the U.S. .

Maternity care experts are particularly interested in postpartum care. Forty-eight states and Washington, D.C., now provide a after childbirth, up from 60 days. Under the new codes, physicians will be paid to provide extended postpartum care, rather than the two visits that were recommended under bundled coding.

It’s important to track a number of medical issues after birth, including screening for depression, substance use, whether a pregnant mother’s gestational diabetes turned into diabetes, or whether cardiac changes returned to normal after birth, said , a Medicaid and maternal-child health expert who is president of Johnson Policy Consulting.

With the new codes, “you have that opportunity for ongoing care, and you have a way to finance it,” she said.

Experts who represent employers say they understand why ACOG has been pushing for these changes, but they are concerned that they will result in higher costs.

“ACOG is saying that obstetricians are being underpaid, and there’s probably some truth to that,” said Jeff Levin-Scherz, population health leader at WTW’s health management practice and an assistant professor at Harvard’s T.H. Chan School of Public Health.

Levin-Scherz noted reports of increasing visit intensity, reflecting the time and resources a doctor spends on a patient and resulting in higher payment. “It’s not likely that this new set of visit codes will be exempt from that,” he said. Even though patients may not be on the hook directly for the cost of prenatal and postpartum visits, to the extent that there are more visits and they’re coded at a higher level, “if their plan is paying more next year, their insurance premiums will go up more,” he said.

Magda Rusinowski, a vice president of the Business Group on Health, which represents midsize and large employers that self-fund employee health benefits, said she is concerned that the new system will encourage the use of additional and more frequent tests and more expensive providers rather than doulas, for example.

“Fee-for-service in every discipline incentivizes more tests and higher-level providers because that’s what generates higher billing,” she said.

Still, “it’s early days,” Rusinowski said. “Many in the industry are trying to think about how this will unfold.”

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Medicaid Work Rules Surprise States

Thu, 04 Jun 2026 18:30:00 +0000

The Host

Julie Rovner �鶹Ů�� Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of �鶹Ů�� Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

New rules out this week from the Trump administration for implementing work requirements for adult Medicaid recipients surprised many state officials. The rules make it more difficult for states to determine who should be exempt from the requirements, including by stipulating that having a serious condition such as HIV or cancer does not automatically excuse an enrollee from having to engage in 80 hours per month of paid work, volunteering, or school attendance.

Meanwhile, a separate rule would give political appointees far more power over who gets health and science grant funding, and what political activities grant recipients can participate in. This would be a dramatic change — currently most decisions are made by career scientists and outside peer reviewers and based solely on scientific merit rather than whether they advance an administration’s political agenda.

This week’s panelists are Julie Rovner of �鶹Ů�� Health News, Margot Sanger-Katz of The New York Times, Alice Miranda Ollstein of Politico, and Liz Essley Whyte of The Wall Street Journal.

Panelists

Margot Sanger-Katz The New York Times

Alice Miranda Ollstein Politico

Liz Essley Whyte The Wall Street Journal

Among the takeaways from this week’s episode:

The Medicaid work requirement was pitched as a massive money-saver for the federal government because, supporters argued, it will keep people who shouldn’t be eligible for the program from being on the rolls. But it is becoming clear that implementing the policy is going to cost states tens of millions of dollars in new hires, contracts, communication campaigns, and tech systems. State officials say this is coming when budget pressures are already high.
The White House has advanced long-anticipated draft regulations designed to give political appointees the final word on federal research grants. The regulations, which have been close to the heart of Office and Management and Budget Director Russell Vought and were included in Project 2025, would empower the federal branch to pull back funding if political appointees find grantees doing work at odds with the president’s agenda.
In a move that went somewhat unnoticed, President Donald Trump on Friday gave his official endorsement to a study by the Department of Health and Human Services that calls for cutting the number of vaccines recommended for every American child. It’s not clear what impact Trump’s action will have — the changes that Health and Human Services Secretary Robert F. Kennedy Jr. tried to make have been put on hold by federal courts.
A final rule issued this past week for the No Surprises Act makes changes designed to improve communication between insurers and providers. The rule does not, however, get at what’s emerged as the law’s biggest problem: When disputes between doctors and insurers reach arbitration, doctors are the overwhelming winners. And it is costing millions. Fixing the underlying issues would probably require legislative attention.

Also this week, Rovner interviews �鶹Ů�� Health News reporter Lauren Sausser, who wrote the latest “Bill of the Month,” about a patient with a temporary memory problem and a less forgettable $59,000 hospital bill. If you have an outrageous or inscrutable medical bill you’d like to share with us, you can do that here.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: �鶹Ů�� Health News and The Associated Press’ “Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US,” by Rae Ellen Bichell, Claire Galofaro, Maia Rosenfeld, Renuka Rayasam, Aaron Kessler, and Byron Tau.

Liz Essley Whyte: The Wall Street Journal’s “,” by Christopher Weaver and Anna Wilde Mathews.

Alice Miranda Ollstein: The New York Times’ “,” by Simar Bajaj.

Margot Sanger-Katz: ProPublica’s “,” by Alec MacGillis and Ken B. Morales.

Also mentioned in this week’s podcast:

Politico’s “,” by Robert King and Alice Miranda Ollstein.
The New York Times’ “,” by Margot Sanger-Katz and Sarah Kliff.
The Washington Post’s “,” by Lauren Weber.

click to open the transcript Transcript: Medicaid Work Rules Surprise States

At a Tennessee Hospital, a Nurse Stole Fentanyl and AI Missed It, State Records Say

Brett Kelman — Wed, 03 Jun 2026 09:00:00 +0000

About a year ago at Erlanger Baroness, the largest hospital in Chattanooga, anesthesia staff noticed that a nurse was slurring his words and struggling to stay awake while on duty in the surgery center, according to a .

In the days that followed, the nurse failed a drug test and was fired, the order states. The nurse later admitted that for months he had pilfered and abused fentanyl left over after surgeries, sometimes daily, according to the order.

Under most circumstances, this would be a routine case of what is known as “drug diversion,” the unlawful taking of controlled substances from healthcare facilities — believed to be so widespread that it occurs at just about every U.S. hospital.

But the Erlanger case stands out because a high-tech watchdog was supposed to be on guard.

The hospital uses the newest line of defense against drug diversion: Sentri7, powered by artificial intelligence and designed to detect missing drugs faster than any human can. But for months at Erlanger, Sentri7 failed to raise alarms, overlooking missing drugs and other “inconsistencies” that “should have been flagged,” the nursing board’s order states.

The Erlanger case, which has not been previously reported, offers a rare glimpse at an apparent failure of AI drug diversion software used in hundreds of U.S. hospitals with little transparency or oversight. Healthcare facilities are not required to disclose their implementation of this kind of software or report malfunctions to anyone, so there is no full account of how widely these programs are used or how often they fail.

Erlanger Baroness, also referred to as Erlanger Medical Center, declined to comment on its use of Sentri7 or on the diverted drugs. André Rebelo, a spokesperson for the health division at Wolters Kluwer, the Dutch technology company behind Sentri7, declined to answer questions about what happened at Erlanger but said the company remained “confident in our software.”

Little Transparency

David Rastall, a Johns Hopkins Medicine neurologist and AI researcher, said that because AI technology is heavily proprietary and hospital officials often don’t understand how it works, this lack of transparency allows for errors to be buried rather than fixed. That means errors could be repeated at other hospitals, he said.

“The ideal for patients, caregivers, and hospital systems would be,” Rastall said, “when an AI is found to be making some type of error, that becomes very transparent and public.”

The Drug Enforcement Administration mandates that hospitals confidentially report lost or stolen drugs. Hospitals can also report stolen drugs to state health agencies, which license medical professionals and investigate wrongdoing.

But these reports are not required to include details about any AI software involved, according to interviews with three drug diversion prevention experts. In interviews, all said they had never seen an AI failure publicly documented like the apparent one at Erlanger.

“I’ve never myself seen these technologies be called out in that specific way,” Jacob Smith, a pharmacist in charge of drug security at Johns Hopkins Medicine, said of the apparent Sentri7 failure. “It doesn’t make sense to me how you could miss it.”

Smith and other experts said the Erlanger case also raises questions because the theft of leftover drugs is one of the most well-known methods of diversion. And fentanyl, a painkiller that can be 50 times as strong as heroin, is one of the most common targets.

Terri Vidals, the founder of , questioned whether the Erlanger case was the result of user error instead of malfunction.

“This is the most basics of basics for this software,” Vidals said. “I find it interesting that they’re saying it wasn’t flagged by the software. I think there’s maybe more to that story.”

The apparent Sentri7 failure at Erlanger was revealed by the Tennessee Department of Health in a routine release of in December. Among those records was the Board of Nursing order, which summarizes a state investigation into nurse anesthetist John Stevenson, who settled the case against him by signing the document in November.

Stevenson declined to comment through his attorney. He has not been charged with any crime related to the Erlanger case. The nursing board put his license on probation while he went to drug counseling.

Bill Christian, a spokesperson for the Department of Health and Board of Nursing, declined to comment on the Erlanger case or Sentri7. In response to public records requests, the Department of Health and the Tennessee Health Facilities Commission each said it possessed no other documents about the apparent Sentri7 failure at Erlanger.

Erlanger spokesperson Charlie Milburn said earlier this year that the hospital had prepared a written statement about its use of Sentri7 in response to questions from �鶹Ů�� Health News.

That statement was never released.

“Our legal team is debating whether this is something we want to talk about at all,” Milburn said in a March email, before later declining to answer any questions.

Kristy Drollinger, a Wolters Kluwer executive who spoke generally about Sentri7 to �鶹Ů�� Health News in March, said the software is in high demand because so many hospitals have struggled to secure their drugs.

Sentri7 monitors about 60 “attributions of risk” that identify red flags for further investigation by hospital employees, Drollinger said.

“It’s pretty scary,” Drollinger said of widespread drug theft. “Every health system, every health facility, has had diversion at some point — and probably has it now.”

‘The Way of the Future’

Drug diversion is a widespread challenge in U.S. medical facilities. It can lead to patients not receiving medication or getting drugs that are contaminated with blood-borne diseases. It’s estimated as many as 15% of all healthcare workers divert drugs at least once, according to the nonprofit .

Diversion has been linked to at least — causing more than 200 infections, mostly of hepatitis C — since 1985, according to the Centers for Disease Control and Prevention.

To prevent this, hospitals attempt to track each pill or vial from the moment it is dispensed to the moment it is given to a patient, by comparing data from electronic medication cabinets and patients’ health records.

Hospital staff once performed this painstaking process manually, but in the past decade the task has become largely automated by anti-diversion software. After years of mergers and buyouts, two programs now dominate the industry: Wolters Kluwer’s Sentri7 and Bluesight’s ControlCheck. Both incorporate AI.

“It’s definitely the way of the future,” said Luke Overmire, owner of .

More than 1,500 hospitals use ControlCheck, according to Bluesight. An additional 700 use Sentri7 Clinical Surveillance programs, which can include its drug diversion software, according to Wolters Kluwer.

Neither company publishes the price of its software. Smith, the drug safety official from Johns Hopkins, said hospitals purchase these “expensive technologies” because a disastrous diversion case could result in a multimillion-dollar fine from the DEA.

“They don’t promise a return on investment,” Smith said. “They promise cost avoidance.”

In 2022, a funded by the National Institutes of Health found that Sentri7, then known as Flowlytics, could uncover drug diversion faster than existing methods. The study’s primary author worked for Invistics, the company that previously owned Sentri7.

According to that study, researchers tested the software by having it comb through medication data spanning two years and 10 hospitals in search of 22 nurses who were already known to have diverted drugs.

The program not only found them all, the study states, but found them faster than humans by as little as a week and as much as a year and a half.

At Erlanger, the humans spotted the signs of trouble first.

According to the Board of Nursing order, co-workers reported that Stevenson appeared impaired “while on duty in the surgery center” on or around June 30, 2025.

Stevenson “had slurred speech, appeared extremely tired, was seen standing with his eyes closed and swaying, exhibited head nodding while standing upright and appeared to have difficulty keeping his eyes open,” according to the order.

When questioned by state investigators, Stevenson admitted that he began diverting “unused fentanyl that would otherwise have been wasted after surgical procedures” in March 2025, according to the order. Stevenson said he used the fentanyl waste once or twice a week at first, then “increasing to daily use” by June of that year, the order states.

Erlanger audited Stevenson’s dispensing record over those four months. It found approximately five instances when Sentri7 didn’t flag missing drugs, according to the order.

It adds that the hospital found “additional inconsistencies between drug dispensing and waste documentation that should have been flagged by the automated monitoring system.”

One possible explanation is provided by the Board of Nursing, which said in the order that Sentri7 was in its “initial learning phase” at Erlanger, though the board provided no details.

In an interview, without discussing Erlanger specifically, Drollinger said Sentri7 has no “learning phase,” because it is trained on nine to 12 months of historical data when implemented at a new hospital.

Smith, of Johns Hopkins, had another theory.

In an interview, Smith said his experience with AI drug diversion software had led him to believe that it is effective at monitoring emergency rooms and intensive care units but less so in operating rooms, where drugs are dispensed and charted differently.

These areas can be harder for AI to track, Smith said, and therefore require humans to keep a closer watch.

“We’ve got people whose entire job is to work with this software,” Smith said. “The software is a piece of it, but if you rely on the software to give you all your signals, you’ll miss stuff. It’s just not 100%.”

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Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US

Rae Ellen Bichell — Tue, 02 Jun 2026 13:00:00 +0000

An Albanian man’s pain grew so unbearable, he said, he pulled out his own tooth as he languished for months in a New Mexico immigration detention center. A Honduran mother of two said she was hospitalized for a heart problem after she was denied blood pressure medications while held in Florida. A said his leg grew purple and swollen from flesh-eating bacteria when staffers at a Vermont facility did not bring him to a scheduled doctor appointment.

Hundreds of detainees across at least 33 states allege in federal suits that immigration detention facilities are failing to provide adequate medical care, an investigation by �鶹Ů�� Health News and The Associated Press found. Detainees say they didn’t get medications on time — or at all — for conditions including high blood pressure, diabetes, depression, epilepsy, Parkinson’s, and HIV. Requests for help went unanswered for weeks. Blood sugars rose. Infections festered. Cancers remained untreated. Detainees collapsed and had seizures.

U.S. jails and immigration detention centers have to meet the medical needs of the people in their charge. But the system is sagging under an influx of detentions since President Donald Trump returned to office: More than 75,000 immigrants were being detained by U.S. Immigration and Customs Enforcement , up from around 40,000 a year earlier.

�鶹Ů�� Health News and AP analyzed thousands of court cases filed since Trump’s second inauguration that use a legal route known as habeas corpus to argue people are being held illegally by ICE. The records offer a rare window into how those detained say, often under penalty of perjury, ICE is handling their medical needs. Reporters also interviewed more than 50 detainees, family members, and lawyers.

The investigation revealed that medical neglect is alleged across the sprawling detention system, including in offices not designed to house people, county jails, and quickly staged sites with nicknames such as “Alligator Alcatraz.”

ICE custody is deadlier than it has been in two decades, researchers wrote in April. The Department of Homeland Security reported 51 people had died in detention since the start of Trump’s second administration — with suicides .

�鶹Ů�� Health News and AP asked DHS to respond to the findings six days before publication, but it did not provide comment. The department’s acting chief medical officer, Sean Conley, has “it is both policy and longstanding practice for aliens to receive timely and appropriate medical care from the moment they enter ICE custody” and that the agency recruits healthcare professionals to maintain high standards. “This is better, more responsive healthcare than many aliens have ever received in their entire lives,” he has said.

Individual facilities and private prison companies contracting with DHS that responded to requests for comment said they follow ICE standards and detainees receive medical care when it is required. Some said they were unfamiliar with the allegations outlined in court documents; others blamed some detainees for lapses in their medical care.

“I have never seen such disregard or medical neglect like this anywhere,” Vardan Gukasian, a political dissident and former paramedic who spent years behind bars in Armenia, wrote in in March to contest his detention in Henderson, Nevada, as it stretched to 13 months despite health problems.

Madeleine Skains, a spokesperson for the city of Henderson, said medical care is always available at the facility and that the court had not ordered changes to his care.

Last June, as Gukasian experienced the symptoms of uncontrolled high blood pressure — dizziness, a nosebleed, and a headache — his cellmate banged on their door for help.

“When it did not arrive, the rest of the block banged on their doors,” he wrote. Gukasian was hospitalized that day.

‘Brazen Indifference to Really Obvious Problems’

The administration’s mass deportation effort has swept up during routine immigration check-ins, at traffic stops, at their homes, and in hospitals.

About have no criminal conviction. Their immigration proceedings are civil, not criminal.

“I couldn’t understand why they treated me so harshly,” said a father of six in Georgia. He said he was injured while shackled in custody when the vehicle transporting him to an Atlanta facility jolted, throwing him out of his seat and into a metal armrest. His wound became infected with E. coli, he said, because he had to sleep on a dirty concrete floor amid leaking toilets.

Like other detainees interviewed, he spoke on the condition of anonymity; they said they fear for their safety, for the safety of their families, or that speaking out would jeopardize their immigration cases. The AP and �鶹Ů�� Health News are not naming anyone identified in court documents without their consent.

Staffers at Stewart Detention Center in rural Lumpkin, Georgia, didn’t adequately respond to that man’s request for medical help, , until he passed out and was taken to a hospital about an hour away. There, he said, a doctor told him he’d narrowly escaped amputation of his left leg. Medical staff found no records of a case matching this description, according to Brian Todd, a spokesperson for CoreCivic, which runs the facility.

The 48-year-old, who moved to the U.S. from Guatemala more than two decades ago, was released in October and is now a legal permanent resident. But he is unsure if he’ll be able to return to his job in construction because, he said, he can no longer lift heavy things due to his injury.

A man in the Atlanta area was injured while in U.S. Immigration and Customs Enforcement custody and developed an E. coli infection. “I couldn’t understand why they treated me so harshly,” says the father of six U.S. citizens, who is now a legal permanent resident but did not want to be named to avoid potential retaliation against his family. (Brynn Anderson/AP)

Some detainees or their lawyers said even basic care was denied: gauze to protect an open foot wound, prenatal care for a high-risk pregnancy, a pillow to ease the pain of sleeping with advanced stomach cancer, sanitary pads for postpartum bleeding.

“I would like to believe the government has the best interest of those it holds in detention for whatever period of time,” Judge Benita Pearson, a federal judge in Ohio, said during a hearing in October concerning a 70-year-old who alleged the government lost her glasses during her arrest. “If one is unable to see due to the loss of glasses when detained, that should be fixed.”

, who worked for ICE and now serves as a special adviser to the American Bar Association, said case law requires the government to treat people in immigration detention with the same care it affords those in traditional jails awaiting trial. But administrators are granted discretion and medical care standards vary.

Detainees are frequently moved across the country, often without warning, interrupting treatment. A woman from El Salvador said she missed a week of HIV medication when she was transferred from Colorado to a county jail in Wyoming.

A Russian man wrote that, while detained in Texas, he saw a gastroenterologist about his painful gallstones and scheduled an appointment with a surgeon. “Unfortunately, I never got to see him, due to my being moved around various detention centers.”

Advocates say that even obvious disabilities, like legal blindness, are ignored.

A detainee who lost one eye and had severe glaucoma in the other required twice-daily drops to maintain what vision remained. But, he said, some days the drops never came.

“Now I can only see a little bit straight in front. It now often looks like I’m seeing through gauze,” the man wrote in a court declaration. “This makes me very afraid that one of these times I am going to open my eyes and not be able to see anything at all.”

He wrote that he was scared he wouldn’t be able to see his infant son grow up.

“It’s just sort of brazen indifference to really obvious problems, things you would have thought absurd a decade ago — like the fact that you can’t see,” the man’s attorney, Brian Hoffman, said. “Before, you could attempt to work with folks on the government side and maybe shame them into doing the right thing. Now, it’s sort of like anything you want done you have to go to court and sue over.”

Even court orders aren’t always enough. One California judge ordered the government to take a man showing signs of prostate cancer to a specialist for diagnosis and treatment. Records show they did not take him.

Lawyers representing ICE told the judge that officials missed the appointment because of an “internal scheduling error.” CoreCivic, which runs that facility, said it was unable to comment on active litigation.

A Surge in Cases

When immigrants file habeas corpus petitions, they exercise a right to challenge unlawful imprisonment that dates to .

More than 40,000 such petitions have been filed during Trump’s second term, fueled by decisions last year to deny bond to many people held on immigration charges. Judges are split on whether that’s legal; the question appears headed to the Supreme Court.

Many habeas claims , but judges typically cite reasons unrelated to the medical neglect described in the petitions, such as detainees’ being held too long before being deported.

The more than 300 medical neglect claims found in this investigation represent a fraction of the problem. The details of habeas corpus cases are often hidden due to a federal rule barring the public from viewing such documents online. �鶹Ů�� Health News and AP obtained some documents from courthouses and received records on 4,400 cases from , a project of the nonprofit Immigration Justice Transparency Initiative. But tens of thousands more remain largely inaccessible.

Some judges have written that the habeas process is not how to raise allegations of medical neglect and have declined to release detainees over those claims. Not every detainee who believes they experienced medical neglect files a habeas petition or cites their medical issues if they do.

Jose-Antonio Segismundo’s petition made no mention of being unable to see an oncologist for the cancer in his abdomen while detained for more than seven months at the Florida detention facility known as Alligator Alcatraz and Folkston D Ray ICE Processing Center in Georgia. Medical records in his court filings show he was arrested about five weeks before his scheduled appointment with a cancer specialist.

His wife, Maria Jose Gonzalez, said he didn’t receive any treatment even though she sent his medical records and explained his condition to officials at Folkston. When his stomach pain erupted, often suddenly and intensely, she said, they gave him Tylenol.

Geo Group, which runs Folkston, follows ICE standards and provides healthcare and access to off-site medical specialists when needed, spokesperson Christopher Ferreira said.

This spring, Segismundo, 48, was deported to Mexico, a country he left nearly 30 years ago, Gonzalez said. Now, she said, he will have to restart his search for care in the Oaxacan village where he grew up.

Maria Jose Gonzalez of Wimauma, Florida, holds a photo of her husband, Jose-Antonio Segismundo, who was detained in U.S. Immigration and Customs Enforcement custody for more than seven months in Florida and Georgia before being deported to Mexico. Medical records show he was arrested about five weeks before his scheduled appointment with a specialist to treat his abdominal cancer. (Chris O'Meara/AP)

Watching Loved Ones Deteriorate

Detainees receiving inadequate healthcare have little recourse. The Department of Homeland Security last year gutted the Office of the Immigration Detention Ombudsman. In early May, it shut the office entirely, arguing that Congress didn’t fund it.

Previously, ombudsman staffers could help facilitate medical care or look into complaints of neglect, according to Matt Boles, an immigration attorney in Georgia. Now, he said, there’s no one to call.

Meanwhile, detainees’ families said they feel helpless, making desperate calls to facilities, the government, and their legislators while watching their loved ones deteriorate.

Riya Khan saw her mother get sicker at the California City Detention Facility, which is owned by CoreCivic. When she visited a week after her mother arrived at the facility in the Mojave Desert, Riya said, the 64-year-old woman stumbled into her seat. She was shaking and her breathing was labored.

Masuma Khan came to the U.S. from Bangladesh in 1997. She has no criminal history, her records say, and was detained in October when she showed up for her regular ICE check-in.

For the month she was detained, according to her daughter, she only intermittently received her medications for conditions including high blood pressure, hypothyroidism, and prediabetes. CoreCivic treats chronic conditions in line with applicable medical standards, Todd said.

“Nothing matters more to CoreCivic than the health, safety and well-being of the people in our care,” Todd said.

Khan said she got her asthma medication for the first time two days before she was released and that her eye drops for glaucoma never arrived. Staffers told Khan she needed to buy some of her medications from the commissary but it didn’t stock them, her daughter said.

Before ICE detained Masuma Khan, she made friends with everyone, her daughter said. She had worked for years at Lucky Boy, an iconic Pasadena fast-food restaurant, and in her free time fed birds and left out fruit for bees that visited her apartment’s balcony.

Now she’s too scared to go outside. She still must regularly check in with ICE, and she’s terrified each time.

Masuma Khan (center) waits in line with her attorney Laboni Hoq (left of Khan) to enter a federal building in Los Angeles for an appointment on April 21. (Jae C. Hong/AP)

Khan (second from right in the front row) and her daughter, Riya (fourth from right in the front row), pose with supporters outside a federal building in Los Angeles on April 21. (Jae C. Hong/AP)

Khan (right) came to the U.S. from Bangladesh in 1997 and was detained for a month after she showed up for a regular check-in with U.S. Immigration and Customs Enforcement in October. Here, she hugs her daughter, Riya (left). (Jae C. Hong/AP)

A “Welcome Home” balloon that was left at the front door of Khan’s apartment in Altadena, California, after she was released from an immigration detention facility. (Jae C. Hong/AP)

Khan’s daughter says that her mother has nightmares and is scared to go outside after being held at an immigration detention facility for a month in 2025. (Jae C. Hong/AP)

A Stroke on a Video Call

Previously, detainees with serious medical needs would likely have been released on humanitarian parole, in part to avoid the cost of their care, Vermont attorney Andrew Pelcher said.

In fiscal year 2023 — before the detained population soared — ICE spent more than $390 million on healthcare for detained noncitizens, according to its to Congress. In May, Todd Lyons, then acting director of ICE, said at a conference that the agency had already spent “almost half a billion dollars” on detainee healthcare this year.

Now, under “mandatory detention,” people are staying locked up with serious — and expensive — conditions.

A Romanian citizen underwent several heart surgeries, including an emergency triple bypass in April 2025, before he was arrested in July. As part of his recovery, the 52-year-old was required to take 16 daily medications. While at an ICE field office in Baltimore, his court filings allege, he went two days without any medication before officials moved him to a facility in New Jersey.

He was hospitalized three times while detained, complaining of chest pains — in part, medical records and court documents say, because despite “countless requests,” the detention center did not provide all his medications. Hospital discharge papers cited by his lawyer show he received only eight of the 16 medications after his second release from the hospital.

“Can you please talk to the ICE facility to make sure they give him his medications?” his treatment providers wrote in medical records included in his court filings. “He was admitted last week for chest pain and today he was readmitted again for chest pain secondary to non compliance for medications.”

Several weeks later in August, he had a stroke while on a video call with his daughter, according to court filings. “He was struggling to breathe, and was pointing at his chest where he was again experiencing pain, and suddenly stopped speaking.” His daughter screamed for help through the video monitor, according to his petition. “Eventually an officer came in to assist him and cut the feed.”

The man lost his ability to speak for four days, the document says. He was returned to detention, where he remained until a federal judge ordered his release in November.

Khan holds medication she takes daily. While detained, she says, she only intermittently received her medications for multiple conditions including high blood pressure, hypothyroidism, and prediabetes. (Jae C. Hong/AP)

Impossible Choices

Cassandra Amador waits for the phone to ring every morning, desperate to ask her husband the question that’s woken her up every night for months: “Did you get your medicine?”

Her husband, Pedro Javier Amador Gutierrez, 36, has high blood pressure and depends on the state-run facility in Florida nicknamed “Deportation Depot” to administer the prescriptions that have kept him alive for years. Many mornings, he tells his wife he did not get them.

When she talks to him, she said, he sounds weaker and more scared every day, not like the upbeat man who would take her kids out for ice cream.

“You can hear in his voice how he feels,” she said.

Now, she said, he’s considering returning to Cuba, which he fled because of political persecution, out of fear that he will die in detention without his medicines. Amador and her children would go with him, she said, even though she was born in New Jersey, has never been to Cuba, and doesn’t speak much Spanish.

But he’s already collapsed twice at the Baker Correctional Institution in Sanderson, Florida, his wife said. She’s terrified that the next time, he won’t get up.

Methodology

�鶹Ů�� Health News and The Associated Press sifted through thousands of immigration habeas corpus claims to find allegations of medical neglect from people detained by U.S. Immigration and Customs Enforcement during the second Trump administration.

Without a comprehensive, publicly available dataset of medical complaints by those in ICE custody, we used immigration habeas corpus claims to identify detainees’ healthcare-related allegations raised in federal court. Although the intended purpose of habeas corpus is to challenge the legality of a petitioner’s detention — rather than conditions of their confinement — these filings sometimes include detainees’ claims of inadequate healthcare.

But habeas corpus filings are not always publicly available. Federal rules restrict how members of the public can access habeas petitions filed by people in immigration detention. For most of these cases, court websites publish only court orders and dockets describing other filings. The initial petitions are available only through in-person visits to federal courthouses across the country. Habeas Dockets, a project of the nonprofit Immigration Justice Transparency Initiative, coordinates a nationwide network of volunteers to gather these petitions and make them available online.

�鶹Ů�� Health News and AP analyzed the dockets of roughly 33,000 cases filed by detainees from Jan. 20, 2025, through March 2026. The vast majority of cases had only basic procedural information, like dates of court filings and rulings. Only about 4,400 included the original petitions.

We also gathered a few dozen case files from courthouses, lawyers, and the Massachusetts federal district court website, which posts most petitions under a unique standing order.

We ran keyword and semantic searches of court records, including petitions, motions, and orders, for terms and phrases potentially related to medical neglect, such as surgery, medications, inadequate medical care, and treatment for chronic conditions such as diabetes and high blood pressure.

We found about 500 cases potentially alleging medical neglect. At least two reporters reviewed each case manually, yielding more than 300 cases containing specific allegations in sworn filings of delayed, denied, or deficient healthcare.

To be conservative, we excluded dozens of cases that alleged inadequate medical care but lacked specifics, for example a petitioner writing, “I have been sick and don’t get proper treatment,” or a judge noting a petitioner “complains that ICE is ignoring his medical problems.” We also excluded cases in which petitioners claimed only that they were denied special diets, exercise, or other accommodations that they said were key to managing their health conditions, such as a petitioner writing, “I suffer from Parkinson’s and cannot properly exercise,” or claiming that the food provided was unfit for a person with diabetes.

The cases we analyzed were neither randomly selected nor representative of immigration habeas filings nationwide. The claims were not independently verified. Many filings are not publicly available, and not all detainees raise medical concerns in court, so our account of cases represents a limited window into the landscape of claims, rather than a comprehensive picture.

Associated Press journalists Garance Burke, Valerie Gonzalez, and Tim Sullivan as well as �鶹Ů�� Health News correspondent Kate Wells contributed to this report.

This report is a collaboration between The Associated Press and �鶹Ů�� Health News.

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Telehealth Booms as Demand for GLP-1s Surges and Questions Mount About Safety, Oversight

Lauren Sausser — Mon, 01 Jun 2026 09:00:00 +0000

Within 24 hours of injecting the first dose of a weight loss medication she received following a visit with a telehealth doctor, Karleigh McClain was admitted to the hospital, she said.

The 31-year-old compliance consultant from Hendersonville, Tennessee, said she couldn’t stop vomiting.

“Sunday morning, it all hits,” McClain recalled, as she described what happened that weekend in January. “I can’t keep anything down.”

McClain said she thought the dosage the telehealth company had prescribed seemed too high. She tried to contact her doctor, but when she didn’t get an immediate response, she said she called the company and a “care team” representative confirmed the instructions — which said to inject 2.21 milligrams of the semaglutide medication once a week — were correct.

It turned out, however, that was nearly nine times the amount patients are typically told to take for their first dose.

Nearly a month after she was diagnosed with an overdose, McClain said she was “still dealing with the residual side effects,” including an elevated heart rate and vision problems she felt were tied to the medication.

Most patients who have taken a GLP-1 received their prescription through a primary care doctor or a specialist, shows. But as the uptake of telehealth has grown substantially since the start of the covid pandemic, McClain is one of millions of Americans who have used online companies to meet a variety of their medical needs.

Many of the companies have started offering GLP-1 medications for weight loss as demand for these drugs has exploded. But certain medication errors tied to GLP-1s have exploded too, according to a �鶹Ů�� Health News review of Food and Drug Administration data, and physicians and telemedicine researchers worry that adverse experiences tied to telehealth companies are becoming more common.

Bad outcomes aren’t unique to telehealth providers or to the compounded weight loss drugs many of them offer. In fact, product liability lawsuits alleging patient injuries have been filed overwhelmingly against pharmaceutical giants Eli Lilly and Novo Nordisk, which manufacture name-brand weight loss drugs, court data shows. The drugmakers have defended their products.

However, some critics are also concerned that getting a weight loss prescription online is usually much easier than getting one through an in-person appointment. Not only do many telehealth companies write quick prescriptions for GLP-1s, but they often sell the medications, too, allowing patients to bypass in-person pharmacy visits. This one-stop shopping isn’t necessarily a good thing, according to critics who say some telehealth providers are writing prescriptions for people who should not be taking GLP-1s and then providing little or no follow-up care.

“It gives a black eye to telemedicine,” said Elizabeth Krupinski, an experimental psychologist at Emory University who has conducted research on the effectiveness of telehealth.

Telemedicine stands to benefit “so many people,” Krupinski said, particularly when the technology is integrated within a larger healthcare system. That way, patients benefit from the convenience of telehealth while maintaining a connection with their in-person providers.

But some telehealth companies are marketing GLP-1s as an easy way to lose weight — sometimes with the help of paid celebrity endorsements — without emphasizing the importance of healthy eating and exercise, she said.

They may be following the letter of the law, Krupinski said. But writing prescriptions while skimping on care “is not in the Hippocratic oath.”

McClain says she overdosed on an injectable weight loss medication in January after following dosing instructions from a telehealth provider. (Arielle Weenonia Gray for �鶹Ů�� Health News)

The Perfect Storm

Starting around 2020, many states loosened restrictions on telehealth, which allowed online companies to proliferate. This helped accommodate patients who could not, or chose not to, be seen in person at the height of covid transmission.

Expanded telehealth access was also intended to lower barriers in rural communities, as well as mitigate doctor and nurse shortages. In many places, telehealth doctors and nurses are legally allowed to treat patients across state lines. But the way telemedicine is practiced , and state laws largely dictate rules that telehealth providers must follow.

Some companies, such as Mochi Health, require patients to meet virtually with a provider, such as a doctor, nurse practitioner, or physician assistant, before they can get a GLP-1 prescription.

But others, including Ro, sometimes require nothing more of patients than an “asynchronous” evaluation, which does not include a live conversation with a healthcare provider. During this type of evaluation, customers are typically asked to fill out an intake form and answer a medical history questionnaire before they are evaluated for a prescription. Ro requires a conversation in real time when required by state law, or when requested by a patient or clinician, said Nicholas Samonas, a spokesperson for the company.

“Every patient is counseled by their provider on the potential benefits and risks of treatment based on their individual medical history,” Samonas said. Ro’s clinicians can order lab work when necessary and, when appropriate, may recommend patients seek in-person care, he said.

But some medical experts are concerned that virtual care may be insufficient for prescribing weight loss drugs.

Patients with a history of pancreatitis, for example, should be counseled about potential complications, medical studies show. The same goes for people with a condition called gastroparesis, which affects stomach nerves and muscles, and those susceptible to medullary thyroid cancer.

Some patients may also benefit from blood work or muscle mass screening before starting a GLP-1.

But not all telehealth companies are adequately evaluating patients before writing prescriptions, said Marc-Andre Cornier, an endocrinologist at the Medical University of South Carolina and the immediate past president of The Obesity Society.

When it comes to parsing the good from the bad, “whose job is it to police that?” he asked. The problem, he said, is there aren’t criteria written by a government agency or a medical society to determine which providers are treating patients appropriately and which aren’t.

While the first GLP-1 was approved by the FDA more than 20 years ago, to treat Type 2 diabetes, the use of these drugs took off in 2021 when Novo Nordisk received approval for a semaglutide drug to treat obesity, with the brand name Wegovy. In a 2025 �鶹Ů�� poll, said they had taken a GLP-1.

In a in The New England Journal of Medicine, physician Amanda Banks noted that the proportion of GLP-1 prescriptions written for people who were not diabetic, obese, or overweight increased from 4.5% in 2018 to 17% in 2023.

In the paper, Banks called it “troubling” how easy it is to obtain a prescription for weight loss drugs and worried they might exacerbate existing eating disorders or cause new cases, including of anorexia.

Cornier, who has received compensation from Novo Nordisk for serving as a consultant, echoed some of Banks’ concerns. “It’s not just filling out a form online and then having some random healthcare provider sign off on it,” he said. “There are concerns with some of these online programs that there’s not a proper evaluation, there’s not a baseline, and there’s not proper supervision.”

The American Telemedicine Association, which advocates for the expansion of “digitally enabled care,” has not addressed how telehealth providers prescribe GLP-1s, spokesperson Gina Cella said.

“This is a bit out of our scope,” Cella said, when asked if the association had addressed the topic of telehealth providers and GLP-1 prescriptions.

The lack of clarity makes choosing a company potentially confusing for patients, and the medical profession is partly to blame, said Jamy Ard, an obesity doctor and researcher at Wake Forest University School of Medicine in Winston-Salem, North Carolina.

Doctors have historically done a bad job counseling patients about weight loss, and many people aren’t comfortable talking to their primary care doctor about it, Ard said. Patients think, “Why would I go to my doctor and have them say, ‘Eat less and move more,’ when I have heard that a million times and I don’t want to have that lecture again?” Ard said.

This problem, combined with past shortages of name-brand versions of GLP-1s, such as Ozempic, Mounjaro, and Trulicity, has created a “perfect storm” for telehealth companies to flourish, said Ard, who has received support from pharmaceutical and telehealth companies.

While some telehealth companies prescribe only name-brand weight loss drugs, many also offer cheaper, compounded versions. They act as intermediaries between customers and mail-order compounding pharmacies, which create GLP-1s by mixing active ingredients, such as semaglutide, with additives. The ingredients for compounded drugs are commonly sourced from overseas suppliers, and the formulations are not reviewed by the FDA for safety.

The environment is “very much uncontrolled and poorly, if at all, regulated,” Ard said. “There is just no standard of care.”

Emily Hilliard, a spokesperson for the Department of Health and Human Services, told �鶹Ů�� Health News that compounded drugs “should only be used in patients whose medical needs cannot be met by an FDA-approved drug.”

Hilliard said the agency urges “consumers to be vigilant and know the source of their medicine.”

Understanding the Risks

While weight loss drugs have helped millions of people lose weight, they’re not without risk, the data shows.

A �鶹Ů�� Health News data analysis of the FDA’s Adverse Event Monitoring System found that medication errors made by providers or patients with popular weight loss drugs exploded from just over 2,000 reports in 2020 to over 25,000 in 2025. Those self-reported events involved semaglutide, tirzepatide, dulaglutide, and liraglutide, the generic names for leading GLP-1s.

Among frequent issues cited in the adverse event reports were administration of an extra or incorrect dose, issues with communication about a product, and prescribing errors.

Since 2019, the National Poison Data System has fielded a related to overdoses or side effects from injectable weight loss drugs. The data does not distinguish between overdoses tied to a telehealth prescription and those stemming from an in-person medical appointment, but it is a reflection of how prevalent these drugs have become.

Yet data on potential medication errors and adverse reactions to GLP-1 medications is incomplete, because many issues are never reported to federal officials.

For example, in a , the FDA accused drugmaker Novo Nordisk, the maker of Wegovy and Ozempic, of failing to report some adverse events to the federal government, including suicidal ideation and death.

Nobody knows how often adverse events occur, said Kristen Nixon, a Johns Hopkins University researcher who has studied posts about weight loss drugs on Reddit, a popular online forum.

Her team analyzed hundreds of Reddit posts from 2020 through last August and identified frequent mentions of drug reactions and user errors, such as patients’ not knowing how to correctly dose and inject the medication.

But another finding also stood out to her.

“Wow, there are a lot of people talking about telehealth,” Nixon recalled thinking. Reddit commenters said they got GLP-1 prescriptions from scores of telehealth platforms, Nixon found. Commenters also mentioned several dozen compounding pharmacies — often in the same posts about telehealth.

Pharmacies are typically required to counsel patients on medications they receive. But Nixon’s research found that telehealth companies often mail the medications directly, meaning patients do not need to go to a pharmacy.

“Anecdotally, it seems like the telehealth companies are really facilitating access to compounded medications,” Nixon said.

A collage of weight loss drug advertisements on social media from telehealth companies. In recent months, the Trump administration has sent warning letters to online companies for false or misleading claims related to compounded versions of GLP-1 medications. (Collage by �鶹Ů�� Health News)

Leslie Gammon, 54, an office manager from Wendell, North Carolina, said she turned to a telehealth company called Amble Health for a weight loss drug prescription. She was given a GLP-1 after filling out an online form, she said.

Like McClain, when she received her mail-order compounded medication in late October, she thought the dosage that accompanied it seemed too high. She’d received a box of semaglutide earlier in the month with a much lower dose. But the refill she received was a stronger formulation, and the instructions told Gammon to inject three times the volume she had been taking in previous weeks.

Even though she injected slightly less than that recommended amount before bed on a Sunday evening, she woke up in the middle of the night “throwing up every 20 to 25 minutes,” she said. And it didn’t stop until Tuesday. She was eventually admitted to a hospital in Raleigh and now owes the hospital over $9,000, a medical bill shows.

Amble Health did not respond to questions for this article.

The delivery system for injectable versions of weight loss drugs is more complicated than for a pill. In its National Poison Data System alert, America’s Poison Centers noted that some people reported “accidentally taking 10-times the recommended dose due to confusing measurement units while using a syringe.”

And people who are eager to lose extra weight — before a wedding or a vacation, for example — may choose to self-administer a higher-than-recommended dose, said Arthur Caplan, a bioethics professor at New York University’s Grossman School of Medicine.

Some telehealth companies aren’t doing enough, he said, to make sure patients understand the risks or the complex delivery system associated with the injectable drugs.

“The consent is not adequate,” Caplan said. “There’s no probing to see if you understood anything.”

Cella, with the American Telemedicine Association, said the group has not addressed the difficulty of educating patients about the risks of injecting weight loss drugs. But she pointed to the association’s “,” which states that telehealth business models “must put the patient first.”

Proceed With Caution

Pharmaceutical companies must list potentially harmful side effects when they advertise the name-brand versions of their FDA-approved medications. Potential include nausea, vomiting, changes in vision, low blood sugar, and, in rare cases, thyroid cancer. Meanwhile, telehealth companies have not historically followed the same rules that drugmakers have in disclosing medication risks in advertisements. But the FDA has started cracking down on misleading drug ads.

A national shortage of weight loss medications in 2022 opened the door for compounding pharmacies to manufacture these drugs. But since the FDA declared the shortage over last year, companies that offer compounded drugs are increasingly facing legal and regulatory challenges related to their marketing tactics.

Mounjaro manufacturer Eli Lilly and other drugmakers are suing multiple telehealth companies for promoting compounded versions of their drugs. In one legal complaint, Eli Lilly alleged Mochi Health had engaged in “deceptive” business tactics. In a motion to dismiss the lawsuit last year, lawyers for Mochi Health called the complaint part of a “nationwide campaign to bolster Lilly’s profits by dictating patient care through the elimination of compounded drugs as a treatment option for weight management.” The lawsuit is ongoing.

Eli Lilly spokesperson Michael Jamison said in a written comment that telehealth companies sued by the drug manufacturer threaten “patient safety by falsely promoting supposedly ‘personalized’ compounded tirzepatide” and mislead “consumers about the safety, clinical testing, and effectiveness of their compounded knockoffs.”

Meanwhile, Novo Nordisk has filed 130 lawsuits against “entities engaged in unlawful marketing and sale of knockoff semaglutide drugs,” said Liz Skrbkova, a spokesperson for the drugmaker.

She said the company is committed to “protecting patients from unapproved knockoff drugs made with foreign, inauthentic active pharmaceutical ingredients that pose significant safety and efficacy risks.”

The Trump administration sent a in September and February to online companies such as , , , and . The FDA said these and other companies had made false or misleading claims related to compounded versions of weight loss drugs.

“Your claims imply that your products are the same as an FDA-approved product when they are not,” the agency’s Center for Drug Evaluation and Research on Sept. 9. HHS later referred the company to the Department of Justice after it announced the launch of a $49 version of Novo Nordisk’s Wegovy pill.

When asked about the FDA warning, Abby Reisinger-Moley, a spokesperson for Hims & Hers, pointed to a announcing a shift away from compounded weight loss drugs. The company said in the press release that it had entered into an agreement with Novo Nordisk to sell name-brand versions.

Alex Smith, CEO of Join Josie, an online platform that helps women in menopause lose weight by prescribing GLP-1s, said his company also made changes in response to an FDA letter, to include removing Join Josie’s name from medication vials. “Which I agree with,” Smith said, “because you don’t want patients thinking you’re the compounding pharmacy.”

SkinnyRx and Genesis Health International did not respond to requests for comment.

But these warnings aren’t the first time the federal government has stepped in to ensure that telemedicine is being used appropriately, said Mei Wa Kwong, executive director of the Center for Connected Health Policy.

Prior cases involved attention-deficit/hyperactivity disorder medications and other controlled substances prescribed by telehealth providers, she said. While those drugs pose more risk to patients than GLP-1s, the companies were also accused of improperly screening potential customers.

The onus still falls on consumers to research companies before signing up for their services, Kwong said.

“Always approach anything on the internet with a hint of skepticism,” Kwong said.

McClain was admitted to the hospital after injecting nearly nine times the amount of semaglutide that patients typically take as a first dose of the popular weight loss drug. That’s what her prescription from a telehealth provider had dictated. (Arielle Weenonia Gray for �鶹Ů�� Health News)

‘Keeps Getting Worse’

McClain, the Tennessee woman hospitalized this year after a GLP-1 overdose, said she lost 50 pounds a few years ago by taking a name-brand GLP-1 prescribed by her doctor.

At the time, the medication was covered by her health insurance. This year, when she was ready to take a GLP-1 again following a pregnancy, the drug was no longer covered for weight loss.

To save money by obtaining a cheaper, compounded GLP-1, McClain signed up for Mochi Health after doing her own research. “That was just the most affordable option,” she said.

But within hours of her first dose, she said, she found herself on the phone with poison control.

After her overdose, McClain said, she spoke to a clinical director at Mochi Health, once by phone but mostly via email, about her lingering symptoms before communication paused.

David Pilip, a spokesperson for Mochi Health, said in a statement that the company would not discuss individual patients due to privacy obligations. But he said adverse events are “immediately flagged” and “investigated with extreme precision.”

“Mochi Health takes patient safety extremely seriously,” Pilip wrote in an email. “We promptly initiated a review and have been in direct and ongoing communication with the patient to reach a resolution. We remain committed to doing so.”

McClain anticipates her healthcare bills related to the hospital stay will total at least $900. She said that to get the $159 refund for her three-month membership and reimbursement for the hospital expenses, she has been asked to sign a document saying she won’t take legal action against the company. Her experience, she said, “just keeps getting worse.”

NBC News producer Jessica Herzberg and �鶹Ů�� Health News senior correspondent Fred Schulte contributed to this report.

Do you have an experience using an online company for healthcare services or medicinal products that you think others should know about? Click here to contact our reporting team.

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Baffling. Frustrating. Frightening. What It’s Like To Be Sued Over Medical Debt.

Katy Golvala, CT Mirror — Mon, 01 Jun 2026 09:00:00 +0000

When Christine Wood received a $12,000 bill from Bristol Hospital, she thought it must be a mistake. It was more than she and her husband made in a month combined.

“I’m freaking out,” said Wood, who lives in a 1,700-square-foot home in Terryville, a village just outside Bristol, Connecticut. “I don’t understand it.”

Wood, 52, had weight loss surgery at Bristol Hospital in 2022, hoping it would help with her sleep apnea and the pain in her knees and back. Before scheduling the procedure, she checked with her insurer, she said, and was told the surgery would cost $5,000 out-of-pocket. She paid in advance.

More than six months later, Bristol sent Wood another bill that pushed the cost of her surgery to more than $17,000. Wood said she tried to dispute the charge. The hospital sued her.

“That’s ridiculous. I was told so many times by Aetna: ‘$5,000 out-of-pocket,’” Wood said. “I never would have had the surgery had I known it was going to cost almost 20 grand.”

Wood is among more than three dozen Connecticut patients the Connecticut Mirror and �鶹Ů�� Health News interviewed over the past year who were sued by their hospital or physician over unpaid bills.

The patients include teachers, small-business owners, a postal worker, a retired nursing home aide, a nurse, and a hotel bellhop. Most had jobs and health insurance. Nearly all said they wanted to pay what they owed.

Patients taken to court described baffling bills, confusing health plan rules, and frustrating and fruitless telephone calls to hospital billing offices and health insurers’ customer-service lines. Even when they tried to resolve their outstanding bills, many said they couldn’t get answers.

Bristol Hospital is part of Bristol Health, one of Connecticut’s most financially strained health systems. (Shahrzad Rasekh/CT Mirror)

Their experiences encapsulate breakdowns in the healthcare system that trap patients in debt. Health insurance didn’t cover care for reasons they couldn’t understand. Several patients did not qualify for financial assistance from providers, despite modest incomes. If they committed to pay, patients were hit with liens on their homes or interest payments and court fees that piled new debt onto their medical bills.

The industry’s key players blame one another for a broken system. Providers say insurers’ saddle patients with massive bills even when they have coverage. Insurers say at rates that outpace inflation.

Meanwhile, patients are stuck with the fallout. In 2022, about carrying medical or dental debt.

“It’s bad enough that I have bad health and have to pay mountains of medical bills,” said Samantha Mantiera, whom Danbury Hospital sued in 2024 over $10,000 she said she was erroneously charged. “Then to constantly be dealing with incorrect bills and then a lawsuit on top of it took me over the top.”

Mantiera said she spent months trying to explain to the hospital and then a collection agency that her insurance statements indicated she owed just $260. She was sued anyway.

After Mantiera contested the lawsuit, Danbury Hospital withdrew it, court records show.

Mantiera said she and her husband now travel up to an hour from their Brookfield, Connecticut, home to avoid hospitals owned by Danbury’s parent company, now called Northwell Health.

Kathy Holt, who leads the state Office of the Healthcare Advocate, said that in the past several decades healthcare has only gotten harder for patients to navigate. The agency fields thousands of calls every year from residents looking for help with medical billing questions.

“I’ve talked to too many people who have just given up,” Holt said. “The system has been made so hard for them, and I feel like it’s deliberate.”

‘They Would Not Talk to Me’

Debt collection lawsuits against patients have declined in Connecticut since 2019, a CT Mirror-�鶹Ů�� Health News analysis of state court records found. And court records show most Connecticut hospital systems have stopped suing patients, including the state’s two largest systems, Yale New Haven Health and Hartford HealthCare.

Most hospitals stopped suing patients during the covid-19 pandemic as they reevaluated their collection practices, said Sarah Ginnetti, chief revenue cycle officer at UConn Health. The system ceased lawsuits in 2022, records show.

“In some of those circumstances, it just felt misaligned with our mission as an organization,” Ginnetti said. “For the small handful of cases that we might gain some type of legal victory, we really didn’t feel as though that would be our best path forward.”

Yale New Haven Health and Hartford HealthCare would not discuss why they stopped suing patients, instead issuing statements about their financial assistance programs.

Scores of medical providers — including physician groups, dentists, and hospitals — , data shows. The CT Mirror-�鶹Ů�� Health News analysis found more than 1,500 healthcare-related debt cases filed in Connecticut courts in 2024.

This included lawsuits by Bristol Health, an independent local health system that includes Bristol Hospital, and Nuvance Health, a chain of seven hospitals recently acquired by Northwell Health, a multibillion-dollar system based in New York.

Nuvance hospitals filed over 4,000 collection lawsuits from 2019 to 2024, records show. Over the five years, the health system accounted for more than a quarter of the roughly 16,300 medical debt collection lawsuits against patients identified in state court records.

Hospital officials and other medical providers say they try to work with patients who have trouble paying their bills. Nikki Schulz, chief revenue officer for Northwell’s Connecticut hospitals, said in a statement that years ago the system “eased” its collection practices, leading to a “precipitous decline” in medical debt referred to collections.

“We fundamentally retooled our approach to align with industry best practices,” Schulz said. Records show the health system sued about 200 patients in 2024, down from 2,200 in 2019.

Healthcare executives also say they have a responsibility to try to collect.

“I don’t have a choice,” said Bristol Hospital CEO Kurt Barwis. “What we’re trying to do is sustain a mission of taking care of this community.”

Bristol Health is one of Connecticut’s most financially strained systems, and executives are currently in talks with the administration of Democratic Gov. Ned Lamont about an . The proposed deal is, in part, an effort to keep the hospital afloat.

Barwis said the hospital has taken steps to help patients with unexpected bills, including enlisting financial counselors to reach out to patients before elective procedures to discuss cost and financial assistance.

But Wood, who was sued by Bristol, said no one from the hospital talked to her before her surgery. When she called the hospital after receiving the $12,000 bill, she said she was told there was nothing they could do because her insurance had denied the claim.

“They would not talk to me about it,” Wood said. “They wanted their money.”

Bristol spokesperson Albert Peguero also blamed Wood’s insurer and said the hospital worked with Wood as she went through numerous insurance appeals with Aetna.

Wood didn’t fare any better with Aetna. It turned out that her health plan covered only $15,000 worth of bariatric surgery, meaning she was responsible for any bills that exceeded that.

Aetna spokesperson Shelly Bandit said Wood had been notified of this provision, though Wood disputes this.

The back-and-forth with the hospital and the insurer enraged Wood. But after she was sued, she concluded she had no more options. She settled with Bristol, agreeing to pay the full balance on a payment plan of $150 a month, court records show. Under the agreement, it would take Wood almost seven years to pay off the debt.

Last year, Wood faced additional financial challenges after her mother died and her husband lost his job and was unemployed for six months.

Wood said she’s regained about a third of the 100 pounds she lost after her surgery because of the stress. Some months she pays Bristol less than $150. In January, the hospital placed a lien on her home.

“We don’t have savings. We don’t have the extra money. We’re living check by check,” Wood said. “We’re working-class people trying to make a living, trying to do the right thing. And we always get screwed.”

‘I Don’t Have Hours on End’

It’s difficult to know how many medical debt lawsuits arise from disputed bills. But most U.S. adults with healthcare debt say they’ve received a bill in the past five years that they thought contained an error, according to a .

The prevalence of disputed medical bills is one reason many advocates for patients say hospitals and other healthcare providers shouldn’t sue people they treat.

“Understanding insurance to begin with and then navigating denials or bills that are not plainly understood leaves patients stuck in an opaque system where they have the least leverage and power,” said Eva Stahl, a vice president of Undue Medical Debt, a nonprofit that has worked with states to buy and retire debt — including for more than 150,000 Connecticut residents.

“Patients understandably are left with questions and confusion,” Stahl said.

Last year, a judge dismissed one of Danbury Hospital’s lawsuits against a patient over a $64,000 unpaid bill, citing the hospital’s “failure to prosecute with reasonable diligence,” according to court records. (Shahrzad Rasekh/CT Mirror)

Timothy Bigham, who owns a construction company and was sued in 2023 by Danbury Hospital, said he never understood why he was billed more than $64,000 after he was hospitalized following a 2019 heart attack.

Bigham, who lives in Danbury, Connecticut, said he was insured at the time. But soon after he got home, Bigham began getting regular calls from the hospital. He was told his insurer wasn’t paying the bill because he refused to “release medical records,” he recalled.

“I had insurance when I had the heart attack, but it’s my job to get the insurance company to pay?” Bigham said. “I’m self-employed. I work in construction. I don’t have hours on end to sit on the phone trying to talk to somebody at an insurance company.”

Bigham said he ultimately “stopped dealing with it” because he didn’t know what else to do.

Then, in 2023, Danbury Hospital sued him. A judge dismissed the case in 2025, citing the hospital’s “failure to prosecute with reasonable diligence,” according to court records. But by then, the alleged debt had devastated Bigham’s credit score, tanking it by over 100 points, he said.

Northwell’s Schulz declined to comment on any specific patient cases, citing privacy laws.

Connecticut barring medical debt from consumer credit reports.

A handful of states have tried to protect patients from lawsuits through limiting when hospitals can pursue legal action. Illinois, for example, prohibits lawsuits against uninsured patients who prove they can’t afford their unpaid bills. Nevada, New York, North Carolina, Maryland, and Virginia prohibit liens and foreclosures for medical debt.

Dominique Jean Pierre was sued by Norwalk Hospital for over $20,000 after being hospitalized. (Joe Buglewicz for �鶹Ů�� Health News)

‘It Was a Nightmare’

Dominique Jean Pierre was equally surprised by the $20,000 bill he got after he was hospitalized at Norwalk Hospital with a urinary tract infection in July 2020.

Jean Pierre, 66, had worked for nearly two decades as a bellhop at a Hilton hotel in Stamford owned and operated by Atrium Hospitality, a Georgia-based company. When he got sick, the hotel was temporarily closed because of covid lockdowns.

What Jean Pierre didn’t realize, he said, was that the hotel had also cut off employee health benefits. He said he was told by the hospital that he’d be responsible for the bill.

“It was a nightmare,” he said.

Jean Pierre said he begged his manager for help but was told there was nothing the company could do. Atrium Hospitality did not respond to requests for comment.

Two years after Jean Pierre’s hospitalization, Norwalk Hospital sued him for more than $20,000, court records show.

Jean Pierre said he tried twice to apply for financial assistance, but the hospital told him he and his wife made too much to qualify, even though his medical bills totaled almost a quarter of their annual income of about $87,000.

With nowhere to turn, Jean Pierre settled with Norwalk Hospital, now part of the Northwell system, in 2025, agreeing to pay the full bill in $100 monthly installments, records show. At that rate, he will be paying off the debt until 2042.

After the settlement, he said, the judge encouraged him to reach out to elected officials to try to get the debt canceled. Jean Pierre was exhausted.

“He says to me, ‘You have to go to your senators. Go to the governor.’ I said, ‘That’s too much. [I’m just going to] let it go.’”

Jean Pierre has left the Hilton and now works as a personal care attendant, as does his wife. But he said it still nags him that businesses and healthcare providers received millions of dollars in government aid during the pandemic, while he was left with $20,000 in medical debt.

“They gave money for the hotel. They gave money for the hospital. They gave money for a lot of stuff,” he said. “But we don’t see none.”

Jean Pierre settled the lawsuit that Norwalk Hospital brought against him, agreeing to pay his bill in $100 monthly installments, records show. At that rate, the debt will be paid off in 2042. (Joe Buglewicz for �鶹Ů�� Health News)

‘I’m Not Trying To Run Away’

Other patients said they felt trapped, even if they tried to do the right thing.

Deneen Brown, who runs a small daycare out of her home in Norwalk, was sued by Norwalk Hospital in 2024 for $7,200 over bills she allegedly incurred “on or about 2019 and 2020,” according to the lawsuit.

Brown said she was stunned by the lawsuit, as she believed she’d had health insurance at the time. But as a small-business owner who took pride in maintaining good credit and staying on top of her finances, she said she committed to taking care of it.

“I’m not trying to run away from something that may be my responsibility,” Brown said. “If you say I owe it, I’m going to figure it out, and I’m going to pay it.”

In January 2025, she agreed to a nearly 13-year payment plan of $50 a month, court records show. Often she pays more, she said.

The following month, the hospital placed a lien on her home. Brown said she never realized the hospital would continue to penalize her, even after she agreed to a payment plan.

“Had I known that, I would have never settled,” she said.

Norwalk Hospital in Norwalk, Connecticut, and other medical providers owned by Nuvance Health, now known as Northwell Health, filed over 4,000 debt collection lawsuits from 2019 to 2024, records show — accounting for more than a quarter of such suits against patients identified in state court records during that period. (Shahrzad Rasekh/CT Mirror)

This article was produced in partnership with , a statewide nonprofit newsroom that covers public policy and politics.

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